Update / Comments - NIDS
by: Michael J. Goldberg, MD, FAAP

With apologies for not jumping in more frequently, I am going to try to jump in at least weekly or biweekly with comments on recent postings and / or issues coming up within the practice.  By doing it this way, I hope I can take a regular part in the activities of this list, and help all of you bring this effort together – we are so close, but . . . .

And that is the start, with the hearings in Washington; the good news is there is little (if any) opposition to the idea we are dealing with a different syndrome from "traditional" autism.  Unfortunately, based on my experience at the NIH and the rally, it is obvious that the “gap” is still in the idea that while many are recognizing this as different, “triggered,” and likely a disease process, I believe that few understand that this means an ongoing “evolving” disease process vs. the concept of a static encephalopathy or fixed condition. 

The good news is that we may be very close to bridging that gap in understanding (I would dare say the “switch” was hopefully thrown at the hearings for a few of the NIH people there). The bad news is that while the establishment might be swayed into dealing with the real crisis, if confronted with solid and real science, (even if that means a “paradigm” shift in thinking) it will fight adamantly if assumptions are thrown out that do not make sense or are not supported scientifically. 

For example, looking at the current vaccine “crisis”:  IF one is foolish enough not to recognize that there is a temporal relationship between what is happening to some of these children and “vaccine stresses,” (in the midst of an enlarging truly horrible epidemic),  then that person, congressman, or researcher is going to begin to look pretty foolish.  But if that persons is given the opportunity to fight, and they are confronted with statements that won’t be supported by science (i.e. implications that the vaccines are the cause of this crisis / epidemic), then they will be able to use “real science, real facts”, to prove these accusations wrong, feel like they have won another “skirmish, while in reality merely continuing a fruitless battle, nobody will really win in the end. 

I went back to Washington with the ability to safely say that with funding and manpower, we could have 1 to 4 new agents in trial within the next 6 to 8 months for your children (that is still dependent upon funding and hiring support personnel, but that is now the ONLY contingency).  However, as many of you are aware, I have always stressed that to get a pharmaceutical company to look at your children now (NOT after years of adult work) was something that had never happened before (but COULD happen now).  With the science falling into place, and the “logic” looking appealing, if a “class action lawsuit” (over the MMR link) is undertaken, it is likely that every pharmaceutical company and organization would go into a defensive holding pattern, possibly stopping any chance at new trials for your children.   WE need the pharmaceutical companies, the Academy of Pediatrics, and others in the “system” IF we are to have any chance to change this fast enough for the majority of children out there.   The next few months are likely to be critical for all of you and your children. 

Other comments include:

·        Comments made regarding the fact there is no association of “wild” (more virulent, more severe) measles, mumps, or rubella causing Autism, is only one of the many logical scientific observations that argue adamantly against a direct connection to the MMR.
 

• Rather, I would urge all of you to make that “step back” – look at the “big picture” and realize the logic here is a predisposed population, SOME of whom may have a temporal relationship, but not causal relationship from a vaccine injection. 
• Additionally, IF truly vaccine connected, the numbers would be significantly higher than they now are – again “common sense.”

Computers are one of the strongest tools for “redeveloping” these children’s brains and thought processes – efforts should be enlarged to reach out to other organizations, perhaps computer companies, to help provide computers for the many children and families that can not afford them for the purposes of “cognitive rehabilitation.”  (imagine the CD ROM’s that could be created to help . . .)

As noted above, congressman Waxman (and otheres) can be made to look very foolish for not helping congressman Burton solve this crisis, but NOT if given the ammunition of the NIH, CDC, Academy of Pediatrics and others to “refute” the “assumptions” being presented.  

• It may seem like only “semantics” – but how things are said, and what assumptions are made, are “critical” if we’re going to “help” the system change quickly, rather than having to fight over this for years to come.
  
  While the finding of measles viral particles may be a good scientific fact, since they were also present in ¾ Ulcerative Collitis / Crohn’s Disease patients, and since some of the MMR cases had already begun their regression BEFORE the vaccine, it is NOT reasonable to say this establishes a “causal” relationship.
• WE must demand common sense, logic, good science, and focus the “fight” and treatment efforts constructively.
• The fact that there are comments regarding connections to the DPT, Hep B, etc. again leads one to realize the stress of a vaccine may be a trigger in different children, but it is not THAT vaccine, that “organism” that is the real reason. 
• I do believe we can wake up the establishment at this point very quickly – but you have to know how to “beat it at its own game.” 
• This was the reason for the creation of the NIDS Medical Research Board – we have the ability, the expertise and the scientific credibility  to help all of you change this now (and likely have the “establishment” join in!!

“Molds” and other non listed impurities should raise a level of caution with all of you

• A common impurity apparently in many brands of St. John’s Wart and “other” products is the same impurity that caused an immune triggered eosinophilic state, killing some adults in  the Southwest in the late 1980’s (remember the “tryptophan scare – it was not the tryptophan, it was the “impurity”)
• I believe you should have a healthy skepticism of any new or old nutritional product without studies either showing proof of efficacy or starting as a pharmaceutically pure product.  This is not very likely at the present time.

The clock is ticking for these children,

MJG